Drug Watch

Newton infant struggles for life

Some couples wish for a bouncing baby boy when they find out theyâre pregnant. Some hope for a sweet little girl. Still others say they donât care, as long as the baby is healthy. What they donât wish for is a string of surgeries for their newborn and a continuous struggle for survival each and every day.

But thatâs the reality for Staci and Lenny Sassman of Newton, parents of 11-month-old Khloe Lane Sassman.

Khloe was born Oct. 7, 2009, at Mercy Medical Center in Des Moines. She is the sixth Sassman child to be welcomed into the world.

âKhloe came out screaming,â said Jen Gannaway, Staciâs sister. âShe was like a normal baby.â

But the Sassmans knew their daughter needed special attention even before she was born.

Staci had a 3-D ultrasound performed during her pregnancy, gaining a more complete picture of the growing baby with real-time movement. At 16 weeks, she also underwent amniocentesis, a procedure to remove the amniotic fluid containing fetal cells and chemicals produced by the baby, to test for abnormalities in the baby. It was during this procedure that doctors found Khloeâs posterior encephalocele â a protruding sac on the head filled with brain tissue â hydrocephalus (water on the brain) and a bilateral cleft lip/palate. The Sassmans were asked if they wanted to abort because their baby wasnât expected to live.

âI was heartbroken, and I couldnât understand why God would allow this,â Staci said. âI cried the whole way home from Des Moines not knowing what to think. I knew that I would not get an abortion like the doctors asked and that we would see this pregnancy through.

âThe whole pregnancy, I treasured every kick, hiccup and any other movement that she did. The night before our scheduled C-section, I remember sitting on the couch thinking, âIs this the last time I am going to feel her?â I wanted to stay pregnant forever, as I knew that I could keep her safe inside me.â

The fight for life begins

The day after she was born, Khloe underwent brain surgery to remove the encephalocele. She spent nine days in the neonatal intensive care unit, during which a small muscular ventricular septal defect (a tiny hole in her heart) and hearing loss in one ear were found. She now wears a hearing aid. The hydrocephalus is monitored every six months to ensure the condition is not worsening. She also made a trip back to the hospital when she was just six months old for her first surgery to repair her cleft. However, doctors came across the unexpected as they tried to fit a breathing tube down the babyâs airway.

The tube wouldnât fit because Khloeâs airway was too narrow â as small as a coffee straw. The condition is known as âstove pipe trachea,â and she underwent surgery in Iowa City to repair her tiny airway on July 21. She was only expected to be in the hospital for three to four weeks, but week seven has arrived and Khloe has yet to leave.

According to www.karing4khloe.com, a website set up to support Khloe and give information on an upcoming fundraiser, Khloeâs airway partially collapsed Aug. 5, causing yet another surgery to be performed the next day. Ten days later on Aug. 16, doctors discovered something else to be repaired; this time, it was a pin-sized hole in the graft that had previously repaired her airway. Khloeâs chest was opened a third time for a surgery to repair the new damage on Aug. 17.

Over Labor Day weekend, Khloeâs doctors determined that she will need another brain surgery soon because her hydrocephalus has gotten bigger.

âThey want to do either a shunt or a third ventriculostomy,â Staci said. âThey are hoping to let us go home for a time and get back to a normal life, then we will have to come back for that. They have also found that she has global atrophy of the brain. They found that this weekend as well with an MRI and CT. They said that Khloe will have effects of this, but only time will tell as to what.â

The most recent scare for the family occurred Tuesday and brought with it a fresh round of surgery on Khloeâs fragile body. Staci said her daughter wasnât breathing well on the vent, so she was taken to the OR to dilate her 2-mm-wide airway to 4-mm using a balloon.

âThey had to be very careful because if they stretched it too far, her graft site and windpipe would give way and then there would be nothing they could do, as the windpipe would be totally gone,â Staci said. âThey thought it worked. Well, Khloe arrested in the OR and they had to do a trachea (tracheotomy). She will now have a trach (plastic tube for breathing) and will come home with one.â

More airway expansions are planned for Khloeâs future and doctors hope that she will one day be without her newly-acquired trachea. She will also undergo more surgeries to repair her cleft lip/palate until she is about 17 years old.

Refusing to give in

Despite the tremendous complications that sheâs encountered in her short life, Khloe is not giving up.

âShe has been a fighter from the first day of her life,â Staci said. âShe has so many issues, but she always smiles and giggles. We cannot wait to see her big, blue, beautiful eyes again. ... She has fought the battle and has many scars to prove that she has been in the fight of her life, and she has won.â

Throughout her many surgeries and the seven-weeks-and-counting stay in the hospital, Khloe has had a constant companion. Staci hasnât left her daughterâs side since the little girl was scheduled for her first airway surgery. Her husband, who works in Des Moines, also makes the trip to Iowa City as often as possible.

âYes, I stay up here (in Iowa City) with Khloe,â Staci said. âI have not gone home since her surgery on July 21. I stay in her room on a couch. We also have a room down at the end of the hospital; it is called a Rossi room. I go there on nights when she is stable and I can get a full nightâs sleep without the monitors going off or nurses coming in. If anything changes during the nights that I am down there, they call me and I come right up. Most nights, though, I am in her room as the nurses and I have taken turns holding her oxygen by her face ... â

Staci and Lenny have a nightly ritual with their baby, too.

âEvery time they (the doctors) have her go to sleep and put her on the vent, they give us Mommy/Daddy/Khloe time,â Staci said. âWe get to say ânight-nightâ and that we love her so much and that we will see her and hold her soon. We say that all through tears and while our heart is breaking.â

A Benefit for Khloe

With all the surgical procedures and hospital stays, the Sassman family has racked up an âastronomicalâ amount of medical bills, according to Gannaway. To help the family alleviate some of that debt, a fundraiser called âKarnival 4 Khloeâ is planned from 2 to 7 p.m. Saturday, Sept. 18, at Community Heights Alliance Church, 2500 S. 13th Ave. E. in Newton.

âFor the most part, weâll have those wrist tickets,â Gannaway said. âWeâre gonna sell those for $5 â $7 at the door, $5 in advance. Pony rides will be $1 and a dunk tank will be $1 for three balls. We are having some people from a hair salon doing girlsâ hair and nails â $4 for hair and $2 for nails.â

Other activities at the âkarnivalâ include a dessert walk, with desserts generously made and donated by community members, animals from the Jasper County Animal Rescue League, arts and crafts, supper, a silent auction and performance by Basement Beat. Gannaway said that about $5,000 has been raised so far.

âI cannot believe how many caring people we have in Newton and how supportive they are,â Staci said. âThey do not know how much their words and their kindness has helped ... knowing that there are others out there praying for Khloe, thinking of Khloe and loving Khloe like we do â itâs overwhelming. Itâs like Newton is a big family that rallies around those that need help. I cannot thank them enough for their support, their love, their prayers and their kindness.â